CCSVI: had liberation done in April 09

kandyc74 · Post by **kandyc74** » Wed Oct 21, 2009 7:00 pm

I was a participant in the study for CCSCI under Prof. Zamboni from Italy. This past April I went to Italy for Liberation in Ferrara. I am 10 years in to my MS diagnosis and have done Avonex and Rebif. Cytoxin as well as Novantron and now Tysabri. With in 24 hours of liberation I was able to ambulate without thinking of it first. Was able to get dressed standing in middle of room without holding on to chair or sit on a bed. Ambulation was stable. Wasn't at that level of activity for a long while. I did return home from Italy with blood thinners for about a month with no ill affects.
I truly believe this is a huge breakthrough for all of us that suffer from such an unstable disease.

radeck · Post by **radeck** » Wed Oct 21, 2009 7:12 pm

Great. Could you share more information about your procedure?

There's also a tracking project here on TIMS at this address:

http://www.thisisms.com/ftopict-8346.html

So far 8 patients from the US have commented, but none of Dr. Zamboni's patients have posted so far. Would you be willing to use this format to describe your experiences in more detail? A friend of mine is also working on the Italian translation of the introduction, in case it is difficult to understand.

Rokkit · Post by **Rokkit** » Wed Oct 21, 2009 7:22 pm

Thank you so much for posting here! How are you doing now?

CRHInv · Post by **CRHInv** » Wed Oct 21, 2009 7:40 pm

Wow! I am so excited to hear from you. Welcome and please tell us more!

MrSuccess · Post by **MrSuccess** » Wed Oct 21, 2009 8:29 pm

hi kandy ....thanks for stepping up . Are you able to speak freely ?

There is much to ask.

Mr. Success [ you can assume that is my name

]

Ernst · Post by **Ernst** » Thu Oct 22, 2009 1:50 am

.. and Mr. succass, please, behave..

MaggieMae · Post by **MaggieMae** » Thu Oct 22, 2009 4:36 am

Kandy,

Thanks for posting. I see that you are now on Tysabri. If that is correct, did you start it after the procedure in Italy or had you started before you went to Italy? What is your reasoning for continuing the Tysabri? I'm asking because my husband is also on Tysabri and this is a consideration -do we continue after CCSVI procedure or not.

SammyJo · Post by **SammyJo** » Thu Oct 22, 2009 10:16 am

MaggieMae wrote:

What is your reasoning for continuing the Tysabri? I'm asking because my husband is also on Tysabri and this is a consideration -do we continue after CCSVI procedure or not.

This is a big question we've all got to face, especially if we are using an MS drug with harsh side effects.

My neurologist felt CCSVI was too early to take serious, so I plan on sitting in his lap if need be to get his attention, after my stents are in. It is the neuros who need to pick up the ball on the remaining immune system issues, the iron deposits in the brain and nervous sytem repair. For long time progressive cases like me, the stents are just the beginning of recovery. I hope Dr. Zamboni's follow up study will shed some light on the neurologic care of patients, after vascular intervention.

Rokkit · Post by **Rokkit** » Thu Oct 22, 2009 10:19 am

SammyJo wrote:I hope Dr. Zamboni's follow up study will shed some light on the neurologic care of patients, after vascular intervention.

Amen, sister.

Loobie · Post by **Loobie** » Thu Oct 22, 2009 1:42 pm

I quit Tysabri right before my stent surgery and now take LDN. I had an attack on it, so to me, it wasn't working!

mrhodes40 · Post by **mrhodes40** » Thu Oct 22, 2009 6:40 pm

Lew did you have a rebound getting off Tysabri? Sharon mentioned that she was at a lecture recently where they discussed that aspect of the drug.

It may be worth discussing that aspect of that drug with your neurologist: if you think there will come a day that you would want to get off of it, that may matter more to some people in terms of decision making and they may prefer something without that possibility.

Loobie · Post by **Loobie** » Fri Oct 23, 2009 3:47 am

I did, but it passed quickly. I was thinking "great, it is doing something and now I'm off of it and getting ready to get worse", and then it subsided. So you are correct that it's something to be concerned about. I would imagine, maybe I'm wrong here, that someone who'se been on it longer than I was (7 or 8 infusions) may have a bigger rebound. I did have one, but it was totally manageable.

Sharon · Post by **Sharon** » Fri Oct 23, 2009 12:03 pm

Marie was correct - when I was at an MS Informational meeting this week, there was talk about the rebound effect by the speaker Dr. Vollmer. It is something that he seems to be concerned about and there were four or five questions from the audience related to relapses after being taken off the drug. I am not familiar with the drug. Do you only take it for a few years?

I slipped over to the Tysarbi forum where there is a discussion
http://www.thisisms.com/ftopict-4423-rebound.html

I think it is important for everyone who is going for the procedure that they are aware of any risks going off a medication whether it is MS related or not. I went off the LDN for two months but I knew there would be no side effects.

Sharon

wobbly · Post by **wobbly** » Sat Oct 24, 2009 5:04 pm

WELCOME / did u ever find marino when u were there/ we were so lucky / good 2 hear from u/ peace

prof8 · Post by **prof8** » Sat Oct 24, 2009 9:08 pm

Don't know who Dr. Vollmer is but there have been some recent studies that show NO rebound effect after Tysabri. My understanding is that there was one study that gave everyone a scare but wasn't replicated. When they talk about rebound they did not necessarily mean renewed disease activity (symptoms) because that has been shown to happen with CRABs. What they meant by rebound was a sudden increase in brain lesions.
I'm having CCSVI in Dec. but my decision to stay on or go off Tysabri has everything to do with PML. Tysabri has been a wonderful drug for me. It would be the perfect drug without the risk.